I just submitted her story (the abc one) as a news story at care2. http://www.care2.com/news/member/982642538/3746501 . If people vote on the story (by noting it) it may end up being in the top news stories there at the advocacy site (we need advocates to get interested in our cause!) and it would be great to vote this into their main news page which lots of people read articles from and the comments in them.

One can comment now on the news story I submitted there.. good for our advocacy cases too eg we could highlight Katrina Hansens case in our comments (I hope someone puts the link to Karina Hansens petition in a comment) and of how those who have ME are at a very high risk of this kind of abuse as its harder to prove (and bring that to news reporters and public attention.. we need to get the general public more aware of the issues and unfairness those with ME face.

The problem is all our information is coming from the Pelletier family, and none from the hospital or the child protective services, because of privacy constraints. We don't know if the Pelletiers are truly abusive or not.

Kids are taken away from their families all the time. We just don't hear about it because the parents don't often have the smarts to construe the situation politically and take it to Glenn Beck. This situation has become a rallying cry for the Christian Right in the US, which is using it as the proverbial political football.

This is not to say that the situation isn't deeply disturbing. Everyone who has kids reacts to this story with deep fear. We identify strongly with the Pelletiers. We think that they are just like us.

I am not confident of the petition site. While I signed it, there were "red flags" that made me nervous. I only want the best for Justina and her family.

Click to expand...

I think there are a lot of red flags with this situation and the longer it continues the more I find something about the parents unsettling. But then it can be said that this story from all sides, is quite unsettling.

The gag order came from a judge not the hospital and I find the diagnosis of somataform illness appalling. But I think it's important in this case to keep in mind that we are only getting the parent's side of the story. So a lot we are hearing/seeing is really speculation.

I have worked with DCFS in Illinois as well as being a mandated reporter and despite some glaring problems with these type of agencies, the way this is being reported in the media is not quite in sync with how these organizations usually work. I wanted to elaborate on this but it's late. Since I may not be posting much in the next couple of days, I wanted to point out some of my concerns now.

Unfortunately, child abuse does happen and it can take many forms. Whether child abuse happened in this situation, we simply don't have all the facts and don't know the whole story.

I find the way this story is being reported by the media is not only reactionary but also exploiting the family. In real life these type of situations rarely occur in such black and white terms.

But the bottom line is that whatever happened in the past, whomever is at fault this young lady is going through hell and my heart goes out to her as well as the parents, even if it turns out they are misguided.

However, at this point in time, we are not getting the whole story and can really only speculate about what is really taking place.

The problem is all our information is coming from the Pelletier family, and none from the hospital or the child protective services, because of privacy constraints. We don't know if the Pelletiers are truly abusive or not.

Kids are taken away from their families all the time. We just don't hear about it because the parents don't often have the smarts to construe the situation politically and take it to Glenn Beck. This situation has become a rallying cry for the Christian Right in the US, which is using it as the proverbial political football.

This is not to say that the situation isn't deeply disturbing. Everyone who has kids reacts to this story with deep fear. We identify strongly with the Pelletiers. We think that they are just like us.

But what if they aren't?

Click to expand...

Individuals who identify with "the Christian Right in the US" have helped pay for my private medical bills, associated expenses, and court costs. They have sometimes fed me and even bought me clothes. I would most likely be dead without their love, compassion, and financial assistance.

Individuals who identify with "the Christian Right in the US" have helped pay for my private medical bills, associated expenses, and court costs. They have sometimes fed me and even bought me clothes. I would most likely be dead without their love, compassion, and financial assistance.

Click to expand...

Agreed. I'm neither conservative nor Christian, but I think as a group they do get often mischaracterized currently. Glenn Beck and the Tea Party do not represent reality.

The red flags here for me are "somatoform" and "resistance", "gag orders", "non-compliance" and all these terms that are now being used in medical abuse, police abuse, political abuse, corporate abuse as a means to disempower people, and to make people either fearful of, or used to, this disempowerment.

Unreasonable/violating acts are perpetrated, then the normal response to this lack of reason, legality, or agency are labelled with convenient reasonable-sounding terms to justify further disempowerment and diminishing of agency. Innocent people are arrested for non-crimes via "resisting arrest" complaint, and deaf men are beaten and tased because they cannot hear the police officer.

My personal opinion is we are looking in the wrong direction for our red flags. The red flag is we have lost the ability to govern ourselves because we have lost touch with reality as a culture.

The red flags here for me are "somatoform" and "resistance", "gag orders", "non-compliance" and all these terms that are now being used in medical abuse, police abuse, political abuse, coprorate abuse as a means to disempower people, and to make people either fearful of, or used to, this disempowerment.

Click to expand...

Not to mention that they would not take into account contradictory medical opinions, nor allow for a second opinion from a qualified doctor. And "Dutch neurologist" is quite a red flag as well, in my opinion They dispute the diagnosis of mitochondrial disease partially on the basis of lack of a muscle biopsy, despite the older sister having evidence of mitochondrial dysfunction in a muscle biopsy, and mitochondrial disease being very much genetic, yet also won't order such a biopsy to prove the issue one way or the other.

They criticize the family for the medical procedures which she has undergone, despite abundant evidence that at least some of those were extremely necessary, and despite medical doctors recommending and/or approving of those procedures. Their medical insurance also approved and paid for those procedures, something that would not happen if there was even the slightest grounds for rejecting the claim.

What I don't understand is how did the Boston Children's Hospital doctors get to completely dismiss the original diagnosis of mitochondrial disease by the the Tufts doctors? AND why didn't the Tufts doctors put a BIG fight about this? It seems like they should have stepped in immediately to rescue THEIR patient?

For me the phone was answered "Juvenile" by a woman who when I said I'd like to add my name etc gave a big sigh and I was abruptly transferred to someone who said she was not starting a list of any kind but she could take a message for the Justice. So I left my name, state and the message Ema mentioned.

"
What I don't understand is how did the Boston Children's Hospital doctors get to completely dismiss the original diagnosis of mitochondrial disease by the the Tufts doctors? AND why didn't the Tufts doctors put a BIG fight about this? It seems like they should have stepped in immediately to rescue THEIR patient?

This story hits home to me, because several years ago I had a friend who had a *severe* reaction to new carpeting. It was so bad, that she experienced a sudden partial paralysis from it. At the peak of the reaction she could barely walk. Fearing the worst, she talked her mom into taking her to the ER, and once they arrived there, she asked the attending physician if he could do some diagnostic tests to make sure she wasn't having some kind of stroke.

When the doctor asked my friend what had brought on the reaction, and she told him it was the chemicals in the new carpet at her mom's house, that doctor immediately pegged her as a psych case and was ready to admit her to the psych ward. She had to call both her doctor and her therapist, (luckily they were both reachable in that moment), and put them on the phone with the ER doctor to convince him that she was NOT a psych case.

It turned out to be a big stressful fight at the ER, to get the "psych accusers" to agree to let her go home. She told me she would never consider going to the ER again, unless she has a medically approved diagnosis.

omg DB that is terrifying. i think doctors are afraid to stand up to controversy in their field out of self-preservation.
scary prospect risking your medical practice/liscence, but also tragic from the patient's point of view.

plus, we don't know what the tuft's doctors have been trying to do, because they can't talk about it either from the HIPPA
perspective or that of the gag order.